White patches

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i was diagnosed with LS about three years ago.  God it is a hateful disease.  I use Dermovate to keep the LS under control, my urethra is very tiny and there is a possibility it will have to be sorted in the future.  I have been using the Dermivate in this area and also over my clitoris which was slowly disappearing, my clitoris appears to have come back! But I have noticed my skin above my clitoris is white and also on my labia, but only on the outer parts, difficult to describe really but the centre of my 'girlie bits' is a healthy pink/red but round the edge is white. I thought initially that the Dermivate had caused the whiteness but I am wondering now if this is the LS and I should use the Dermovate on this area specifically? Probably a bit of a silly question but has anyone else experienced this? I may well go to doctors anyway to get this checked out. Thank you all, your support is invaluable and soooo appreciated. X

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  • Posted

    I had white patches on the outside of my girly bits, which is how I realised that I had LS. I was given the cream and since I've been using it, the white patches have gone and I have pink skin again. I haven't been diognosed yet. But I know I have LS. It's just convincing everyone else.

    Use the cream on the white patches, it should help.

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  • Posted

    Yes, the white patches indicate that the LS is active and I believe that's where you should concentrate on rubbing in the ointment.  I've only recently been doing that as before I used itching as the signal for treatment but I'm now trying to find out more (using this forum) so I can manage it all better.  Think I was in denial before.
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    • Posted

      My white patches are gone since treatment but I still have some itching. My impression is that I need to keep treating the itch with steroid. Is that correct?
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    • Posted

      Try witch hazel...you can find it without alcohol online...but you can use the one with alcohol also...but it you are at all raw it will sting...so if you can find the other it's best to use and to extend it you can use 15% of purified water. Use this in a spray bottle.  Spray yourself...it's also cleansing, pat dry and apply just a dab of 97% or higher aloe vera gel...it will stop the itch...moisturize the area and help overall with symptoms and healing.
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    • Posted

      So, renee, you use steriod only on the white patches.  Then when they are gone you do the routine with the witch hazel and aloe ?
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    • Posted

      I know that many rely on the steroid. I do not like the side effects...so I have not used it in years.  I tried it early on with out much success as when I stopped it ...everything came back like gang busters...sometimes worse. So now I only rely on the witch hazel, aloe...and manuka honey if I do get a split or get very sore...which doesn't happen much anymore.  I also take vitamin D3, vitamin K3, calcium, magnesium, zinc, vitamin C and B12...which I believe helps.  If you are very sore or have a split 20% or higher manuka honey is medically acknowleged as a great healing salve.  I remove a small amount with a cotton swab and apply it to affected areas at bedtime and slip on a pair of cotton panties.  I'm usually healed within a day or two...but may take a new user a bit longer to heal.  Many take a good probiotic or eat or drink fermented foods as well...yogurt or kefir.  Not everyone would feel comfortable with the natural methods...but fortunately they work for me.
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    • Posted

      Yes I believe it is unwise not to use the steroid as it is the only thing that controls it. If a part itches I always apply there as well as the white patches.

      I don't do the other things some people do as the Advantan fatty ointment I use controls it.

      The only other thing I put near it is Dermeze sensitive when I feel it need moisturising.

      I was also advised against wetting the area too much.

       

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  • Posted

    That's great news your citoris came back. it gives me hope biggrin.

    I thought about stopping to use the demol since the white patches are gone. Along with half the clitoris...but if it'll bring it back Ill start using it again. Who knows ?

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    • Posted

      Mine was like callused over ...but with the witch hazel, aloe vera gel and manuka honey treatment described above to Judy...mine also changed back to normal.
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  • Posted

    Hi - not had the whiteness you descibe and hope others will continue to offer supprot on this but was interested in your reference to the 'small urethra' and possibility that this may need to be 'sorted' at some point.  MY LS is mainly located in the area of my urethra and when I have flare-ups passing urine is absolutely excruciating - though, thankfully, a combination of clob, moisturisers etc keeps the symptoms under control for most of the time.  Sometimes, though, my urine is reduced to a 'trickle' and your reference to a 'tiny urethra' has made me think....? I see my gynaec next month so intend to discuss this further with her - but any further info you could reply would be great. Thanks 
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  • Posted

    Hello Mary, I can't tell you much about my 'tiny urethra' unfortunately. Only that I was recently referred back to the dermatologist as when my doctor examined me she could not find my urethra!!! And thought my anatomy was strange!!!  The lady consultant I saw explained that every 'vagina' was different and that she had recently attended a national conference where all the consultants agreed that the one thing they could agree on was that every vagina was different. She had a very close examination of my 'bits' and said my urethra was there (so pleased to hear that!) but the hole was really really small. As long as I could still pee I was not to worry but if things got really bad they could sort me out.  To be honest I did not ask how I would be 'sorted out' as I didn't really want to know.  So far I can still pee and it does not spray sideways etc. although there are times when I feel I would definitely like to do a wee but nothing comes. I use Dermovate routinely on that area as maintenance.  I am sorry you are having such awful pain and wish you the very best on your next gyni visit. I will point out that I see a dermotolist not a gyni and was surprised when I first saw her, but she is really good and seems to know her stuff. So I wonder if you should see a dermatologist instead of or as well as a gyni. LS can strike anywhere on the body. Best wishes Suzanne x
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    • Posted

      Thanks, Suzanne, for this additional info. Interesting point re a deramatologist vs a gynaecologist. Are you in the UK?

      I hope you, too, make progress with diagnosis and treatment. 

      Mary x

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    • Posted

      Hi again Mary, yes I am in UK and I come under the JR hospital. If you are also in this area send me a private message and I will give you consultants name. X
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    • Posted

      Hi Suzanne - am in north of England but can work out you are quite a way away at the JR hospital. I am certainly going to raise this with my gynaec next month. 

      This is is such a great site - such solidarity! 

      Best wishes, Mary 

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  • Posted

    Hello Suzanne and fellow sufferers....

    first timer here.... Could not agree with you more about it being a hateful disease but can I say a huge thank you to you and all the other generous contributors on LS forum. The knowledge I have gained about LS is one thing. ( like only applying Dermavate to white or itchy areas, I was applying all over vulver to anus even when no longer white. To rub in for 90 seconds was not told  that either  by gynae )   The relief of knowing I am not going through this alone is even more valuable. Thank you all for being so open. 

    I was diagnosed about 2 years ago with LS after being treated for thrush for about 18 months. I reckon if a friend of mine had not told me of her exact symptoms and diagnosis I would probably still be going down that road or would have chucked myself under a passing wildebeest !

    I too have a dissapearing clitoris and  a 'covered'  urethra.  Hence I DO pee sideways , well ALLways really,  think small sprinkler ! neutral  for anyone else who has this I find leaning forward on the loo helps to direct flow downwards, so is less messy.  (while I'm on the subject of paper, some brands of THAT irritate my nethers too dont know if they do others?)

    Anyway back to my urethra, the gynacologist said that with the skin fusion, it was like having a hose pipe and putting a curtain in front of it and that if it becomes difficult to let him know. !  I think the only option then is surgery.

    re deramatologist vs a gynaecologist - said friend was referred to a dermatologist by her gynaecologist.  I will ask gynae about it next time i see him.

    Best wishes

    Caroline xxx

    x

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    • Posted

      Thanks for helpful post, Caroline. I suspect I too may have a covered urethra so am going to raise this with my gynaec next month.

      Mary

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